Mrs. Burschman

Hi Lisette! Welcome!

My grandfather was Dutch. I'm hoping to come and visit sometime. I think he had dysautonomia, too.

I'm glad you found the forum. It's really helpful.

Amy

Interesting. Thanks for posting!

As for CFS and POTS, I've heard that there's a lot of overlap. A high percentage of CFS patients have orthostatic intolerance.

Amy

That would be awesome if it was fixable! It would also be scary, of course, but the possibility of a cure is grand!

Good luck!

Amy

I have POTS and PCOS, though I don't know what kind of POTS, so I didn't vote in the poll.

I take metformin, 1,500 mg per day. It works great, even though my blood sugars are fine. I think my ovaries are just too sensitive to insulin, so even normal is too high for them. Or something.

I asked my reproductive endocrinologist once if he thought there might be a connection. He said he wouldn't be surprised.

Amy

(((Thankful)))

This is probably a dumb suggestion, but would there be any opportunities for you in phone nursing, for lack of a better term? I know that many hospitals have "Ask a Nurse" lines that are staffed by nurses. I've found them to be really valuable. Last week, I made an appointment at Georgetown Hospital, and they have a phone line where nurses help patients find the right doctor for their condition and make appointments. It seems like the type of work that could possibly be done from home, if you found the right employer (and the State Nursing Board agreed.)

Alternatively, I wonder if there would be a similar opportunity in a volunteer position with a group such as the American Cancer Society or a local helpline. Obviously, it wouldn't provide a paycheck, but you would definitely feel like you were making a difference. A friendly voice on the other end of the phone line is such a blessing!

I have no advice to offer on the children question, besides this: It's a loss for you. Don't beat yourself up over grieving. It's only natural that you would feel pain in your disappointment.

Your involvement in this forum makes a difference. You are a treasure to each and everyone here.

Amy (Mrs. Burschman)

I was told by a biofeedback specialist that I was working with that UNDER NO CIRCUMSTANCES should I agree to a lie-detector test (not that I'd have any reason to need to.) He said my body is constantly in the state where it looks like I'm lying. So no life of crime for me, either.

Hi Daphne. I'm sorry that you're struggling so. Know that you're in good company here! We definitely understand coping with multiple issues (not to mention all sorts of diagnoses.)

I'm glad you found us. Welcome!

Amy

It's like watching children, maybe you can handle 4 or 5 well behaved toddlers, but the minute one starts throwing a tantrum, all of your energy goes to that child and the other children can start misbehaving too because you can't watch over them as well since all of your attention is drawn to the one that is kicking and screaming. That's just my theory.

~ Broken_Shell

I love your theory!

I'm glad that you had a good experience. That's really great that they're working to help you so soon.

I hope they figure out what's wrong -- and can help make it better!

Amy

I'm sorry for your loss, Elfie. My thoughts are with you and your family.

It sounds like you've got lots of things working against you. Were you riding in the car, or driving? I tend to get nauseous when I'm a passenger, especially in stop-and-go driving. Driving bothers me less because then I can anticipate the direction my body's going to go.

Migraines sometimes make me puke. And I don't know about you, but sometimes I have a migraine one day, then sortof an echo the next day.

When I tried to quit Paxil (which is what led to my POTS diagnosis) I was throwing up every day, among other symptoms. So I know that unchecked dysautonomia can cause it too.

I hope you feel better soon! There's little that's more uncomfortable than feeling queasy!

Amy

I agree with Pat. It sure seems like your symptoms could be better controlled. And that doc sounds like a candidate for the Hall of Shame!

Amy

I thought about finding some long underwear... probably a hard thing to find in this warm region. I don't have compression stockings and I REALLY don't want to fake it with woman's pantie hose... now that could lead to a bad start in the business

Running tights might be an option. They would probably provide better compression than pantyhose anyway, and be less hard to explain if you got caught!

Amy

Shannon,

From what I've read, withdrawal problems from SSRI's are more common than most people realize. I imagine that it could take a while for your own body chemistry to "even out" after being manipulated by the medicine for three years.

How do you feel physically? Are you doing OK POTS-wise off of it?

I can't stop taking Paxil, unfortunately. I don't get depressed when I don't take it, I get sick as a dog (tachycardia, neuropathy, nausea, diarrhea, a nearly constant feeling of panic.) Until I find some other miracle way to control my screwed up autonomic nervous system, I'm stuck.

Have you talked to your doctor about it? An option might be to restart it, but maybe just half of your biggest dose, then taper down again, REALLY SLOWLY. Like six months for each step downward. You also might try fish oil, which is supposed to support healthy brain function.

Believe me, I feel for you! When I had to restart Paxil, I felt like such a failure. I REALLY wanted to get off of it, and I had spent more than a year tapering off.

Just remember, if you do need to restart it, there are worse things in the world. Such as feeling really depressed or panicky all the time!

Take care,

Amy

I second that!

I have a rough idea of what IGA and IGG are, but what are Alpha-1, Alpha-2, Beta, Gamma, Kappa and Lambda?

Sounds like Sorority Row to me.

You could also send a letter to your congress person. You are the poster child for why we need health care reform in this country.

Don't just send them a letter -- ask them for help! Every member of Congress employs constituent service representatives whose sole job is to help people navigate the federal bureaucracy and receive disability benefits. It's still a slog to qualify, but it's a lot easier with their help. They have better phone numbers than the general public, and know just who to call. My husband used to be one.

Amy

Wait a minute.......I keep hearing this is the best health care system in world, we don't need to change a thing. It's an outrage this goes on in this country. Until the masses stand up and vote these corparate rats out of office it's only going to get worse.

Uh oh. Treading on dangerous territory there, Todd!

A true dufus would spell that word correctly instead of the far more sophisticated words you routinely do spell correctly.

Hmm. I always thought it was "doofus." And I'm a copywriter/former editor!

Good luck, Erik! I think it sounds like it just might work for you.

Amy

i kinda feel like a layer cake. first this dx, then another dx, add this dx, and this dx, throw in mono and sprinkle in the e b virus and before you know it you've got = POTS

Bellamia~

Yep! I second that! Good description.

Amy

I've tried Ambien and other sleep meds, but they've never worked for me.

J

Sleep meds don't work at all for me, either. Benadryl does, but I almost never need it.

Amy

Kayjay,

None of the benzos seem to work in me. It's weird.

Kayjay,

Ativan doesn't do anything for me, either.

Amy

I seem to have a 'temperature range' in which I function the best. Anything warmer than 78 degrees and I'm too hot, anything under about 65 and I'm too cold. Now if I could only find a place to live with those temperature ranges. I know Arizona is not it, and neither is Iowa!

My inlaws live in Sonoma County, California. That sounds about like their weather!

I don't think that's a common complaint of POTS folks. A lot of us seem to run a consistently low body temperature.

Anyone else?

Amy

Thanks for sharing. Cute kids!